Re: Hello from Peace and Carrots Farm

[Guest guest]

Hi . Thanks for sharing about your medical conditions. It

sounds like you are carrying a heavy load and my heart goes out to

you! As far as LDN is concerned, I think it would be very important

for you to contact Dr. Bihari, who is the recognized " expert " on

LDN. The folks in this group are great, but out of enthusiasm for

LDN, and a desire to see others benefit from it as we have, we

sometimes seem to " cross the line " and sound like we are

giving " medical advise " . Really, all we are capable of doing is

quoting the official low dose naltrexone website and giving our own

testimony about our experiences with it. And our experiences, though

similar in some respects, also differ quite a bit. Sometimes when I

read the posts I get concerned that people expect LDN to be a miracle

drug and that they expect it to take away all their symptoms, at

least with MS. But the only actual claims made for LDN is that it

reestablishes normal immune function thereby preventing any further

relapses or progression for MS. I'm speaking about MS here because

that is what I am familiar with since I have that myself. I don't

have any knowledge about other conditions, or how the immune system

effects them. But am very happy for about those with fibromyalgia

and cancer, or other conditions, who have been helped by LDN and love

to read their testimonies! Anyway, what I am trying to say is,

please get advice from an expert like Dr. Bihari regarding LDN and

your particular conditions. And do keep us posted, as we are all " in

your corner " . God Bless. Sue

> My name is and I just learned about the existance of LDN

today. I have

> a lot to learn and lots of questions.

>

> I am a bit leary of " alternatives " I've tried everything from

naturopaths to

> massage to accupuncture and long term antibiotics. I have bits of

what seems

> like every autoimmune disease. Some solid diagnosis' are lupus,

myasthenia

> gravis, diabetes, rheumatoid arthritis and the $%!@!! congestive

heart failure.

>

> At the moment I am taking motrin, prevacid, celexa, bumex and

mestinon plus

> diabetic vitamins and primadophilus. I used to be on high dose

> prednisone....and gained a couple hundred pounds! ;-o I also need

to use a CPAP machine and am

> on 5 liters of o2. Gosh!!! I'm a wreck, aren't I?

>

> Today I realized my neighbor, was perkier than I had seen her

in years.

> She said it was due to LDN. At this point I'd try just about

anything! The MG

> got much better with mestinon, but now I'm in a downward spiral

again. I had

> 5 blood transfusions last year and am creeping up to the place

where I need

> more. The CHF has been responding less and less to Bumex. I *did*

get my blood

> sugar back to normal by changing my diet ;-)

>

> Please help me to understand LDN. If someone got kicked out of a

chatroom for

> talking about it....I gather it's controversial. Thanks :-) I look

forward to

> learning a lot.

>

> (wsm311@a...)

> Peace and Carrots Farm

> Vermont

> http://www.homestead.com/peaceandcarrots/

> http://www.sHikingHiatus.com/

[Guest guest]

Hi Sue,

Love your Post....Good advise to .....We do get carried away

a little with our enthusiasm for LDN.....We don't want the ADA

coming down on us for prescribing without a license...lol.

I know first hand that ldn is not a cure, but after being on

avonex and copaxone, it does seem a little bit like a miracle. When

I read posts like Guy's and Larry's, I feel so happy for them and a

little sad for myself. LDN has not, as Guy puts it, " given me my

life back. I still walk with a walker, but with a little more

energy, balance and strength. And I didn't have to get a

wheelchair!!! It's hard to explain, but I just feel better all

over. I am taking ldn to stop the progression of the desease and

get my ammune system back in sync.....The other great things

happening are just icing on the cake....and keep em coming....lol.

Hugs, Sally

> > My name is and I just learned about the existance of LDN

> today. I have

> > a lot to learn and lots of questions.

> >

> > I am a bit leary of " alternatives " I've tried everything from

> naturopaths to

> > massage to accupuncture and long term antibiotics. I have bits

of

> what seems

> > like every autoimmune disease. Some solid diagnosis' are lupus,

> myasthenia

> > gravis, diabetes, rheumatoid arthritis and the $%!@!! congestive

> heart failure.

> >

> > At the moment I am taking motrin, prevacid, celexa, bumex and

> mestinon plus

> > diabetic vitamins and primadophilus. I used to be on high dose

> > prednisone....and gained a couple hundred pounds! ;-o I also

need

> to use a CPAP machine and am

> > on 5 liters of o2. Gosh!!! I'm a wreck, aren't I?

> >

> > Today I realized my neighbor, was perkier than I had seen

her

> in years.

> > She said it was due to LDN. At this point I'd try just about

> anything! The MG

> > got much better with mestinon, but now I'm in a downward spiral

> again. I had

> > 5 blood transfusions last year and am creeping up to the place

> where I need

> > more. The CHF has been responding less and less to Bumex. I

*did*

> get my blood

> > sugar back to normal by changing my diet ;-)

> >

> > Please help me to understand LDN. If someone got kicked out of a

> chatroom for

> > talking about it....I gather it's controversial. Thanks :-) I

look

> forward to

> > learning a lot.

> >

> > (wsm311@a...)

> > Peace and Carrots Farm

> > Vermont

> > http://www.homestead.com/peaceandcarrots/

> > http://www.sHikingHiatus.com/

[Guest guest]

Hi Sally. Thanks for your note. I too have tried Avonex (what a

nightmare!) and Copaxone (daily shots for 2 1/2 years). Neither of

them did me any good (that I could tell), and I continued to progress

the whole time. Since starting LDN (last March) I have had some

improvements in symptoms, but like you, I am still quite aware that I

have MS. I still need a walker, and use a scooter for longer

distances. I need extra rest, can't stand the heat, and have

problems with memory and other cognitive issues. But, like you, I

also " feel better " and have some improvement in my energy level,

endurance and balance. And the thought that my MS won't progress any

further is a huge weight off my mind! So, I am very pleased with my

experience with LDN.

From reading the posts over the past few months it is clear that some

people have a good response to LDN right from the start, while some

have to be on it awhile before noticing any difference. Some

struggle with sleeplessness and leg stiffness, while others don't.

Some have symptom improvement, while others remain the same. Some

struggle to find the right dosage, while others don't. So, it seems

we all have a different response to LDN, depending on our symptoms

and disabilies when we begin to take it. And it is unrealistic, even

demoralizing, to expect LDN to " fix everything " relating to MS.

I am very happy to read about the experiences of others...like Guy's

and Larry's. What concerns me is that people may get the impression

that they, too, will have similar experiences to Guy's and

Larry's...even that they SHOULD have them, and that there is

something wrong if they don't. In fact, it seems some have become

depressed because they did not see the same effects in themselves (as

in Lin's post #1025). And that makes me feel very bad for them.

I remember when I was first diagnosed and started

attending " information workshops " on MS. Invariably, I was shown

videos and received magazines featuring people who are living " full

lives " with MS...still working, camping, running marathons and

climbing mountains...etc. I watched Montel on TV, who had

recently been diagnosed with MS, declare how MS had " chosen the wrong

guy " because he was going to " fight back " and wasn't going to " give

in " to MS. He wasn't going to let it run his life! I'm sure all

this was meant to " uplift " and " encourage " people with MS. But the

effect it had on me was...depression! It made me feel like a

failure. Did I not " fight back " hard enough? Was it my fault that I

felt like road-kill? Did MS choose the " right guy " when it chose

me? Was I weak? Inferior? Did I " deserve " MS because I wasn't able

to live (what was being portrayed as) a " full life " ? And what about

others I knew with MS who were in wheel chairs, even some in nursing

homes? Were they somehow responsible for their condition? Did

they " give in " to MS? Would I eventually " give in " , too?

It took me about 3 years to get things in perspective. I realized it

wasn't my fault that I had MS, or that I could no longer work at a

job I loved, or that I had to make accomodations for the physical,

mental and emotional effects of this disease. It took me a long time

to realize that, though their intentions were the best, the hidden

message of all the " uplifting " stories and examples was that those

who weren't still living " full lives " " inspite " of MS

were " failures " . And that this message was wrong.

So, now when I read the posts about some of us who have had truly

remarkable results from LDN, I somewhat cringe inside thinking of

those who are reading the same thing and wondering why those results

are not happening to them. So, while we may have had a great

experience with LDN, and we truly want the same for everyone, it is

not fair to raise other's expectations that it will,or should be, the

same for them. Rather is seems better to help them to take a " wait

and see " attitude and rejoice with them over any improvements they

experience. But most of all, to keep always in mind, that the reason

to take LDN is to prevent relapses and progression of the

disease...and any other effect is " icing on the cake " .

Well, Sally, forgive me for such a long post. God Bless you and

everyone struggling with diseases that have brought you to this group.

Sue

> > > My name is and I just learned about the existance of LDN

> > today. I have

> > > a lot to learn and lots of questions.

> > >

> > > I am a bit leary of " alternatives " I've tried everything from

> > naturopaths to

> > > massage to accupuncture and long term antibiotics. I have bits

> of

> > what seems

> > > like every autoimmune disease. Some solid diagnosis' are lupus,

> > myasthenia

> > > gravis, diabetes, rheumatoid arthritis and the $%!@!!

congestive

> > heart failure.

> > >

> > > At the moment I am taking motrin, prevacid, celexa, bumex and

> > mestinon plus

> > > diabetic vitamins and primadophilus. I used to be on high dose

> > > prednisone....and gained a couple hundred pounds! ;-o I also

> need

> > to use a CPAP machine and am

> > > on 5 liters of o2. Gosh!!! I'm a wreck, aren't I?

> > >

> > > Today I realized my neighbor, was perkier than I had seen

> her

> > in years.

> > > She said it was due to LDN. At this point I'd try just about

> > anything! The MG

> > > got much better with mestinon, but now I'm in a downward spiral

> > again. I had

> > > 5 blood transfusions last year and am creeping up to the place

> > where I need

> > > more. The CHF has been responding less and less to Bumex. I

> *did*

> > get my blood

> > > sugar back to normal by changing my diet ;-)

> > >

> > > Please help me to understand LDN. If someone got kicked out of

a

> > chatroom for

> > > talking about it....I gather it's controversial. Thanks :-) I

> look

> > forward to

> > > learning a lot.

> > >

> > > (wsm311@a...)

> > > Peace and Carrots Farm

> > > Vermont

> > > http://www.homestead.com/peaceandcarrots/

> > > http://www.sHikingHiatus.com/

[Guest guest]

Sue, you have taken the words out of my mouth and brought tears to my eyes.

Thank you for knowing how I feel - God Bless you - ann

[Guest guest]

Well Sue, You did it again....Your post was wonderful, and at times,

I had to look at the signature to make sure it wasn't me writing

it....lol. Thank you for understanding, as only you can, since you

and I are really the majority here. I have two dear friends with

MS, and taking ldn, (I believe they are members here) and at two

ends of the spectrum......one is a miracle walking, where everything

is going perfectly and the other says " I don't feel any different " .

So, you can see how different we all respond to ldn.....I am sort of

in between the two...lol.

You have hit the nail on the head here, and there is absolutely no

reason why we should feel like failures......I mean Montel

is on Copaxone and multi vitamins...lol....what more can I say.

Has anyone here let him know about LDN???? Remember Montel is

getting his support from the big money guys too. Money talks, but

LDN screams to me!!!! I think we are all success stories

here....just at different levels, and we are all supportive of one

another, no matter at what level of success we are.

Let's all smile, laugh and yes, somes suffer together....and keep up

the great support that we have all given to each other here.

Hugs, Sally

> > > > My name is and I just learned about the existance of

LDN

> > > today. I have

> > > > a lot to learn and lots of questions.

> > > >

> > > > I am a bit leary of " alternatives " I've tried everything

from

> > > naturopaths to

> > > > massage to accupuncture and long term antibiotics. I have

bits

> > of

> > > what seems

> > > > like every autoimmune disease. Some solid diagnosis' are

lupus,

> > > myasthenia

> > > > gravis, diabetes, rheumatoid arthritis and the $%!@!!

> congestive

> > > heart failure.

> > > >

> > > > At the moment I am taking motrin, prevacid, celexa, bumex

and

> > > mestinon plus

> > > > diabetic vitamins and primadophilus. I used to be on high

dose

> > > > prednisone....and gained a couple hundred pounds! ;-o I also

> > need

> > > to use a CPAP machine and am

> > > > on 5 liters of o2. Gosh!!! I'm a wreck, aren't I?

> > > >

> > > > Today I realized my neighbor, was perkier than I had

seen

> > her

> > > in years.

> > > > She said it was due to LDN. At this point I'd try just about

> > > anything! The MG

> > > > got much better with mestinon, but now I'm in a downward

spiral

> > > again. I had

> > > > 5 blood transfusions last year and am creeping up to the

place

> > > where I need

> > > > more. The CHF has been responding less and less to Bumex. I

> > *did*

> > > get my blood

> > > > sugar back to normal by changing my diet ;-)

> > > >

> > > > Please help me to understand LDN. If someone got kicked out

of

> a

> > > chatroom for

> > > > talking about it....I gather it's controversial. Thanks :-)

I

> > look

> > > forward to

> > > > learning a lot.

> > > >

> > > > (wsm311@a...)

> > > > Peace and Carrots Farm

> > > > Vermont

> > > > http://www.homestead.com/peaceandcarrots/

> > > > http://www.sHikingHiatus.com/

[Guest guest]

ME TOO MARYANN.....AND GOD BLESS YOU ALSO.....HUGS, SALLY

> Sue, you have taken the words out of my mouth and brought tears to

my eyes.

>

> Thank you for knowing how I feel - God Bless you - ann